Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Things That Make you Go Hmmm

Written by Katie. Posted in Questions

Now that I know I have POTS and Ehlers Danlos, the question has transitioned from what is wrong with me to why is my body doing what it is doing because of these disorders?  It is ironic to me that I searched for a LONG time for answers, and when I found them, I received answers without answers.  Do not get me wrong.  It is a relief to know my diagnoses.  And it is a relief not to have to go to another specialist only to be treated like a crazy hypochondriac, while being handed a depression scale.  But to be honest, I like things black and white.  I like to know that if I do A, B will happen.  I like to have problems (or disorders) where a “one size fits all” kind of approach tends to work.
But Ehlers Danlos and POTS are definitely not those kind of disorders. And maybe that’s why I have them. To help me learn to appreciate the gray.


When I find doctors who actually know about POTS and/or Ehlers Danlos, they explain that they do not know how patients will respond to the prescribed managements/treatments of the disorders because everyone who has them is different.  So, for example, I will say to a doctor, “Do you think prolotherapy will help my instability in my neck?” And the answer will be, “We just don’t know.  It depends on the patient.”  Or I will ask, “Will the Beta Blocker help my racing heart rate, and the answer will be, “It helps some but not others.  We will just have to see.  It depends on the patient.” 


For both Ehlers Danlos and POTS, treatment is all trial and error.  And for both disorders, there is quite a broad spectrum as to how they effect people.  For some with POTS, they are bedridden and on disability.  Others, eat a lot of salt, drink a lot of water, wear compression stockings and are able to function pretty well.  Some with EDS, are in wheelchairs all of the time and most of their joints are splinted.  For others, EDS just produces mild pain at times, but they are able to function and do their daily tasks.   


As I am trying to wade through both disorders and pay attention to MY body with POTS and EDS and how it is effected each day, I find that I come up with more and more questions.


Like…


Why are mornings for me better with POTS when most patients have better afternoons with POTS?


Why do I get sicker, hurt more, and dislocate more joints when I have my period?  Would a low progesterone pill help my symptoms?


Why is my POTS worse when my neck instability is at it’s worse?


Is there a combination of supplements that will best help both disorders?  Should I be on Magnesium?


How long will it take to finally get in to Dr. Grubb?


Would I benefit from weekly IV saline treatments to help hydrate me for my POTS?


Why does my Ehlers Danlos pain travel?


Why does the blood that pools in my legs mostly pool in my left ankle?

Why does my cervical collar help keep my headaches at bay, and why is it hard to keep my head up without it?


What is happening in my stomach where some days I can eat like a normal person, and other days, I can only tolerate soup and Ensure?

Why do I have trouble swallowing at times?

What does it mean when I read, “Strength is bad for EDS, but tone is good,” and how do I go about toning rather than strengthening?


What mattresses are best, and what are the most accurate heart rate monitors to wear?


Why does stress totally exacerbate my POTS?


How do I know if I am truly drinking enough fluids and eating enough salt?

What can I expect as far as function goes?  Will I be able to return to 100% functionality?

Why are most of the problems that I have as far as pain and instability goes on my left side?


Here’s one of my biggies which I’ll save for a totally separate post~Starting a family…I have so many questions about that one, I don’t even know where to start.  Except I’ve considered asking Santa for a surrogate.

So that’s some of them.  It will get figured out.  It will be okay.  It’s life and I have faith.  I know I have to dig deep, find my patience, and keep on keepin on…And hope Dr. Tinkle has SOME answers to these questions.  3 more days!

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Comments (1)

  • Meghan

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    >Love you, love you!!!

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